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Are ‘clap maps’ putting us into bed with Big Data?

Are public health surveillance databases a little too detailed for comfort?


S.E. Smith


Posted on Oct 7, 2014   Updated on May 30, 2021, 11:12 am CDT

Human beings are very fond of having sex and a whole lot of that sex is unprotected, or at least so it would appear from statistics maintained by the Centers for Disease Control. An estimated 20 million people contract STIs like chlamydia, syphilis, and HIV annually, adding to a growing caseload that some refer to as an “epidemic.” With the growing use of technology to monitor and map disease, however, an interesting issue is arising for health providers and members of the public as a balancing act between protecting public health and protecting individual privacy arises.

Thanks to the distribution of resources that are readily publicly available, it’s possible to create what are in essence “clap maps,” documenting the level of STIs in various states. While such documents obviously don’t name and shame the people on your street who have STIs, they aren’t alone in providing a method for documenting cases of STIs in the United States; STI apps like dontspreadit, Hula, and So They Can Know offer options for sharing STI test results and anonymously notifying current and past partners about infections so they can be tested and treated.

Within such systems, which seem on the surface like excellent ways to address the spread of STIs in a landscape where people panic about the vanishingly slim chance of Ebola infection but still refuse to use condoms, lies a complicated issue: Personal privacy, as our bodies and sexual identities become a matter of public property. STIs are viewed as a cause for shame among many communities, instead of a fact of life; a person with the flu never hides her status from friends and coworkers even if they’ve been exposed, for example, while people with STIs may conceal their infectious status or, as the CDC note, not even know about the infection in the first place.

The CDC maintain detailed records on what are known as “reportable” diseases—those that require care providers to file a report with the agency with information about the patient, diagnosis, and location. These records are used to create case maps and generate statistical analysis aimed at helping the CDC identify ongoing trends; the most recent dataset is from 2012.

Chancroid, chlamydia, gonorrhea, syphilis, and congenital syphilis are the only reportable STIs, but they’re enough to give the CDC a good picture of what’s happening in the public health front. However, the CDC don’t publish detailed case information, any identifying details, or other data that could reveal the specific identities of infected individuals, as this would be a violation of medical privacy.

That said, the blurred lines between public health and private lines are making this a more complicated issue. While the CDC don’t share their detailed data, a combination of savvy app navigation, connect-the-dots logic, and use of known reported data could lead determined individuals to information about the infection status of friends, neighbors, partners, and others. Bodies, in this landscape, belong to the public commons, rather than being private; this is a technologically advanced and sophisticated gossip network where information about infected, or possibly infected, individuals can be pushed out through large networks virtually effortlessly. The possibilities for revenge, abuse, and more are considerable.

An estimated 110 million people are living with STIs currently, and 50 percent of new infections are accounted for by people between 15-24. This highlights the fact that the resurgence of S.T.I.s in the United States is an issue of particularly pressing concern, and reality, to U.S. youth, who are confronting poor sexual education (notably, conservative states overall have higher STI rates), fading memories of the HIV/AIDS epidemic, and growing confidence that all diseases can be treated when they choose to forgo safer sex precautions.

HPV (a non-reportable infection, worth noting) accounts for the vast majority of new infections, followed by chlamydia, in a wormhole of data that can keep any scientist or data nerd occupied for hours, but behind those cases are real people, and those people lie perhaps dangerously close to the surface of that data.

While sex offender databases might make sense as publicly available resources, those waters become more murky when it comes to S.T.I.s. Even as people can face legal consequences for deliberately infecting people or failing to advise partners about their infection status, individuals still deserve the right to medical privacy, as it falls within a larger framework of bodily autonomy and privacy rights. Recent data breaches at supposedly highly secure locations, including hospitals, show that no data are truly safe, and that detailed records on S.T.I. patients kept not just as hospitals but at the C.D.C. and research facilities may put them at risk of outing.

This combined with doxxing and vengeful exes could potentially create a perfect storm of circumstances that would lead to public outing of people with STIs or a history of being treated for them, and, along with that, false reports about S.T.I. infections. As medical information becomes more public, this risk only increases; not that long ago, accessing CDC data on STI rates was a much more laborious task. Even as their ready accessibility online has improved medical research, practice, and understanding of STIs, it’s a double-edged sword, providing yet another tool for taking ownership of people within the medical system.

Many people are hesitant to seek treatment for STIs due to social stigma, or because of beliefs about the safety of their medical information. With a growing amount of data stored in digital form, the rise of STI apps (including reporting apps that collect data transmitted electronically from physicians, with patient permission), and an increase in understanding how to exploit medical records systems, there’s a very real risk of breaking broad trends right open into individuals.

As it is, many cities provide extremely detailed data on reportable STI infection right down to zip code. While the ostensible goal is to improve public health initiatives and demonstrate where STI prevention, diagnosis, and treatment funds should be directed, it also raises the spectre of another issue: The fact that anyone could view these maps, start to wonder who in their neighborhood is carrying a hidden illness, and decide to do a bit of snooping to find out.

There’s a long, well-established history of collecting data about disease in the interest of the common good; plague, for example, is reportable out of concerns that a case could develop into an outbreak if not addressed by epidemiologists promptly. But the historic balance between public and private health is becoming even more precarious in the technological era. As surveillance increases and security decreases, the result may be a chilling effect on patients with STI symptoms, which would be very bad news for public health. Perhaps it’s time to be a little more judicicious about the data we release.

Photo via Eric Fischer/Flickr (CC BY 2.0)

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*First Published: Oct 7, 2014, 11:00 am CDT